Rosie Milsom, Fundraising and Communications Manager at Caudwell LymeCo Charity is hoping to find a treatment that works for every patient, at every stage of Lyme disease.
What is Caudwell LymeCo Charity?
We are a UK charity whose vision is for everyone who catches Lyme disease in the UK to be tested and fully cured on the NHS. Our mission is to find a truly reliable test and treatment for Lyme disease that’s able to diagnose and cure every patient.
What’s the charity’s history?
We were founded in 2016 by businessman and philanthropist, John Caudwell, after he and 11 members of his family were diagnosed with Lyme disease. After going public with the struggles he and his family had faced in getting diagnosed, he was inundated with stories from other patients, many of whom had suffered for years without answers. It became clear to him that something needed to be done to improve care for patients in the NHS, so he started the charity in order to fund vital research.
In 2018, the charity was on the National Institute for Health and Clinical Excellence (NICE) Guideline committee for Lyme disease, helping to form the latest recommendations and advice for medical professionals on approaches to diagnosis and treatment, and we also helped to form the NICE Quality Standard for Lyme disease, published in July 2019.
We’re excited about what 2020 will bring as we move closer towards a Lyme disease research project.
What are your objectives?
We have three objectives. Our primary aim is to raise money to fund desperately needed research into a truly reliable test and treatment for Lyme disease.
Our secondary aim is to raise awareness – among the public and with health professionals – of how Lyme disease can be spotted, and even prevented, so that as many people as possible can avoid suffering from this debilitating illness.
We also provide an information and advice service to patients, based on the NICE Guideline.
What is Lyme disease?
Anyone can catch Lyme disease. It’s an infection spread by tick bites that attacks the nerves, brain, heart, joints, and eyes. It can also cause a characteristic skin rash. A common misconception is that Lyme disease can only be caught by those spending time in forests and countryside, but ticks can also be found in gardens and urban parks.
Initial symptoms are a bit like the flu – fever, headaches, swollen glands, or stiff neck. Some people may experience joint pain, cognitive issues and nerve pain, as well as severe fatigue. Many people end up being diagnosed with conditions such as Chronic Fatigue Syndrome, ME or fibromyalgia.
Public Health England suggests there are around 3000 new lab-confirmed cases of Lyme disease a year in the UK. However, given the lack of a truly reliable diagnostic test and treatment, the true figure is thought to be much higher.
A study published by BMJ Open in July 2019 looked at UK GP medical records from 2001 to 2012. It found that cases of Lyme disease increased ten-fold within this time, and that if the increase had continued at the same rate, there will be around 8000 cases diagnosed and treated in primary care in 2019.
The treatment for Lyme disease is a three-week course of doxycycline at 200mg a day. If symptoms persist after this initial course, the NICE Guideline recommends a further three-week course of amoxicillin at 3g a day. When Lyme disease is treated early after infection, antibiotic treatment enables a full recovery in most people. However, if diagnosis is delayed, life-limiting symptoms can develop, from which some people sadly never recover.
Although peak tick season is from May to October, ticks are active all year round, so preventative measures should always be taken. We recommend sticking to well-maintained pathways when out walking, tucking clothes in, wearing insect repellent on exposed skin, and checking yourselves and your pets carefully for ticks when you return home; removing them safely with a tick removal tool.
What research is being undertaken into Lyme disease?
A small amount of research on improving diagnostics and tick ecology is being undertaken in the UK, but it’s not getting the breakthroughs that are required. We are currently in talks with the Department of Health and Social Care to co-fund a project into improving the current diagnostic tests, as their limitations mean that many patients are receiving incorrect results which are impacting their care. We hope these talks will be successful and that we’ll be able to begin this project in the next year or so.
There is a larger amount of Lyme disease research happening in the US, both on improving diagnostics and finding effective treatment for those with a long-term infection. We are watching it with interest. However, it’s important that research happens here in the UK, on UK patients with UK strains of the disease.
How is the pharma industry tackling Lyme disease?
Is there more that it could do? As mentioned, the current treatments available on the NHS do not work for every Lyme disease patient. We need the pharma industry to support research which helps to find a treatment that works for every patient, at every stage of the disease.
Educating themselves about Lyme disease would be of massive benefit to all involved in the industry. Although there seems to be a widened recognition of the disease in recent years, there is still a lot of work to be done in fully understanding the infection and the issues patients face – especially for those who work directly with members of the public (in pharmacies, for example), who may be the first point of contact for people experiencing symptoms.
We are always happy to deliver free awareness talks to medical or general community groups. Should anyone like more information on this, or general information/leaflets on Lyme disease, they can contact the charity directly.
Go to www.caudwelllyme.com